Rocky

Chaya's end of year celebration

We "celebrated" Chaya's graduation from her last year of school. Ever. (See snapshot on the right.) Our state now throws her to the wolves.

We have the choice of kicking her out of her home and plonking her in an institution - Aleh is the one that every professional we've encountered mentions as an option.

Otherwise, she is eligible to attend one of three "day centers" in Jerusalem. My husband visited two of them (the best of the three) and we can't consider those realistic options. People with profound disabilities are provided  nothing beyond very basic care by a staff of 2:10 students. Any therapies that will be offered - and some do not offer any - will be fewer than at her current school where they are 30 minutes per week per therapy. The math is disheartening.

Care to join our fight?

The Kupah (medical insurance fund) we're in offers Chaya 7-12 sessions of physiotherapy. That's per YEAR. Oh, and we forfeit that "gift" if we enroll her in one of the day centers.

Undoubtedly a grim picture. We are keen to petition the High Court for provision of the same services at home as Chaya would receive were she institutionalized. Bizchut assured me that if I could locate another four families to join our petition they would consider shouldering the cost of such an initiative.

Is there is anybody among you, readers, who has a child over the age of 21 with severe disabilities living at home? If so, do you feel entitled to therapies and care -assistance from the government? If you are up for the fight, please contact me.

And on a more upbeat note, my son forwarded this moving Washington Post photo essay of adults with developmental delays who are involved in romantic relationships.

Several years ago I wrote two articles about a Jerusalem couple with Down Syndrome who married, one before the wedding and the second, two years into their marriage. They're here and here. (Note: I used pseudonyms in the pre-marriage article.)

One small step for people with disabilities - Help make it a giant leap

A Bizchut protest event [Image Source]

I'm pleased to share that my emails, phone calls and, I confess, outright nagging, finally bore fruit. I was provided a written statement by Bizchut, The Israel Human Rights Center for People with Disabilities, Israel's foremost advocacy group for that population, regarding institutionalization.

The person to whom the Bizchut CEO referred me, their lobbyist, conceded that she no longer tackles public opinion. She maintained that speaking and writing about the detriments of institutions is futile and irrelevant. Instead, she  fights solely on the legislative and judicial fronts. "That's all that matters," she insisted. Change, she emphasized repeatedly, will only grace us via meetings with Knesset committee members and, petitions to the High Court.

Writing articles is pointless, she told me and, I presume, that included blogging.

Nevertheless, I intend to continue pursuing those routes. For me, the power of the pen (or the clout of the keyboard?) endures. As long as the plague of institutionalization not only persists but thrives, as long as our government generously funds those institutions and as long as public relations for institutions inundates the web -  anti-institutionalization writing can play a role.

Below is the statement which the Bizchut lobbyist sent me. (It came in Hebrew; the translation to English is mine.) She gave me carte blanche to circulate it and I urge you readers to do the same.

Every framework that contains a group of over six residents with disabilities living together, receiving all services (recreational, meals, health, work) in one place with no real contact with or full integration into the community, is an institution. 

Thus, hostels with 24 residents with disabilities are institutions. And certainly Aleh and all the other frameworks housing hundreds of residents with disabilities together in a closed place where they receive all their services is an institution.  

Bizchut's position is that integration into the community must be natural not contrived. Occasionally bringing in volunteers for chance, once-off visits or for structured encounters with the institution's residents is not integration.  

Integration is the inclusion of a person with disabilities in the fabric of normal life within the community and the getting of services in the same manner that the general population gets them in the community. Anything that does not fit this description is, by definition, an institution. 

Who may live within the community? Bizchut's position is that every person with every kind of disability and at every level of functioning is entitled to live within the community. 

Even people who function on a very low level have the right to live within the community. It is a basic right of theirs. Society must provide them full support to enable them to fulfill/realize that right safely and optimally. 

This includes people with significant physical and cognitive disabilities who need a great deal of assistance in all realms of daily life.

Amen.

VNS vacillation

M.E.D.E.K. walking: Chaya and me

Chaya's latest pressure sore is pressuring me these days. It appeared nearly healed last week but then did a 180 and looks terrible today. I texted a photo of it to our incomparably competent, reliable and kind home-visiting nurse. He works for Kupat Holim Meuhedet and, predictably, responded with revised treatment instructions (back to the Flaminal Hydro ointment). (Yes, he is a real person, not a figment of my wild imagination).

On Tuesday, he came by and diagnosed an infection. He says to continue with that ointment but warned to call him if there's fever or increased redness. (Might be a bit dicey with all those neurological fevers Chaya likes to run - they are unrelated to any infection or illness.)

Otherwise Chaya's seizure status has been pretty stable. This could be thanks to her raised cannabis dosage. Nearly a year ago. under the neurologist's instructions, we stopped raising it at 11 mg/kg/day which translated into 11 drops of oil three times a day. But at our visit to her in April, we learned that our dosage was far from the maximum. (Why had the doctor stopped at 11? I have a hunch she only prescribes the stuff and raises its dosage when parents prod her to.)

Anyway, when I suggested raising it this time, she approved. We're now at 14 drops, 3 times a day (i.e. 14 mg/kg). The doctor said that benefits peak for most patients at 15 but that 25 is considered the maximum.

True to form, I'm afflicted with a serious case of optimism again. The doctor didn't give any specifics about the rate of dosage rise so I'm just winging it. Wednesday night, C. seemed very tired and did her M.E.D.E.K. walking with her eyes closed for the first 20 minutes.

(I remember that she was also very sleepy when we first raised her to 11 drops. She gets used to the increases quickly and hasn't been sleepy since.)

At that April visit, the neurologist also pushed the VNS option. So, on Tuesday, we trekked with C. to a neurosurgeon who implants the VNS. He was very friendly and honest. Actually, to a fault (the honesty, that is. I liked the friendliness.) For instance, he told us there's no chance that the VNS would improve C.'s cognitive skills. None whatsoever. And that the assurances we were given to the contrary by the VNS distributer's nurse/salesperson were bunk. She had insisted that even where seizures remain unaffected by the device, cognitive improvement was often detected.

His honesty even included this self assessment: "I haven't got the most VNS experience in this country but I started implanting them before everyone else." Not exactly a confidence-building statement. He went on to assure us that the device was very likely to improve her seizure situation by either reducing their frequency or intensity. ("I don't quote statistics", he added.)

But then he proceeded to the risks. Since the device in C.'s chest which was implanted in December 1999 is very obsolete, the surgeon said he can't replace it by connecting the new one to the old wires. That would have been  a simple procedure done with a local anesthetic. Instead, the entire device and its wires would need to be removed and replaced - surgery that requires a general anesthetic.

Chaya's VNS device was implanted in 1999
just below her collar-bone where it's quite visible
as this snap shows.

In addition, the risks posed by the implant itself include infection in skin and even spreading to the device - which would necessitate a second operation to remove it. Oh and the risk of a stroke. He said it's never happened to any of his patients. But still, I'd say.far from confidence-building.

I then asked him for his opinion about the procedure in C.'s case. Once again he waxed honest: "It's a doable and reasonable move," he said. He added that while seizure control wouldn't improve C.'s level of functioning "since her brain is already fully developed", it would halt her decline.

The thing is, she hasn't been declining for many years. Her condition plateaued a long time ago. Which left me in serious doubt that the benefits outweigh the risks. (I actually raised that with my husband while we were in the office and he ssshhh-ed me emphatically. He doesn't want the surgeon to suspect that we're less than enthusiastic.)

The surgeon was plainly blown away by C.'s gauntness, ("She has zero skin or muscle") and said that were she able-bodied she'd have been committed to the hospital ward for anorexics. We assured him she consumes large quantities of calorie-rich food and we have no clue where it all goes. (She's on a mild version of the Modified Atkins Diet which is said to help control epilepsy.) He was as stumped as we are. He prescribed generous quantities of avocado in advance of the surgery since some fat on her bones would minimize post-op complications.

Well, that's all the VNS news for now. My husband and I have agreed to give the raised dosage of cannabis a chance before deciding about the VNS.

Oh, and when we mentioned in passing that Chaya takes cannabis, the surgeon pronounced: "I don't believe in cannabis."

We're clearly still a long way from acceptance among the medicos.

And for a change: The good

Source: New Yorker

My husband and I are both lawyers (though, in my own defense, I've never practiced).

This week, we can be proud of our profession, at least here in Israel.

Israel's Bar Association has just emailed its members urging them to hire people with disabilities. .

Here is my translation of its call to action:

The Israel Bar Association considers itself an integral part of Israeli society. In the framework of this outlook on life, we believe in the importance of the integration of people with disabilities in the workplace. We urge you, independent lawyers, to participate and absorb people with disabilities in your offices. We are certain that this significant step will lead to equal opportunities for everyone, everywhere.

Here's hoping that a ripple effect of this action will reach our backward government which still promotes the segregation and institutionalization of people with disabilities.

For some background, you might want to look at some of my recent posts:

• On prizes for caring for special children
• The Israel Prize: More about the strange choice of recipient
• Institutionalization: Why Does Israel Continue to Be Infatuated With This Cruel and Archaic Approach?
• Israel is in love with institutions
• The Ruderman Foundation: Friend or foe?